The Bill of Rights for People Living with Epilepsy was created and developed by Novartis Pharmaceuticals Corporation and the Epilepsy Foundation of Greater New York in partnership with a number of leaders in the epilepsy community including epileptologists, neurologists, nurse practitioners, social workers and most importantly, people living with epilepsy. The Epilepsy Foundation affiliates of Greater Chicago, Los Angeles and South Florida also contributed extensively to the development of the document.
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The Bill of Rights for People Living with Epilepsy is designed to inform people affected by epilepsy about issues related to healthcare, health insurance coverage, life at school and life in the workplace. People with epilepsy are encouraged to take an active role in managing their healthcare, however, any and all treatment decisions must be made together with their healthcare team. Those who are informed will gain the greatest benefit from the existing system. |
The Bill of Rights for People Living with Epilepsy is not a legal document. These 10 rights are aspirational goals that the epilepsy community is striving to achieve. None of the information should be construed as medical or legal advice and recipients of this document should not make decisions or take actions based on the information contained in this document without obtaining appropriate medical or legal counsel from a qualified, licensed professional.
1. People with epilepsy have the right to be treated fairly and with respect.
2. People living with epilepsy have the right to receive comprehensive, understandable information about epilepsy and its treatment.
3. People living with epilepsy have the right and responsibility to be active members of their healthcare team.
4. People living with epilepsy have the right to know and understand all of the treatment options that are available to them.
5. Special populations of people with epilepsy (e.g., children, adolescents, women of child-bearing age, people with developmental disabilities, the elderly, etc.) have the right to ask about treatment and information appropriate to their specific needs.
6. People living with epilepsy have the right to understand all of the options and legal protections for accessing healthcare benefit coverage available to them.
7. People with epilepsy have the right to know that healthcare providers will hold personal and medical information confidential.
8. Children with epilepsy may have the right to receive special education and related services at school; parents have the right to advocate for such services.
9. People with epilepsy have the right to know that there are federal and state laws that may provide them with protections in the workplace.
10. People with epilepsy have the right to access help and support that will assist them in making informed decisions about living with epilepsy.
The Bill of Rights for People Living with Epilepsy is not a legal document. None of the information should be construed as medical or legal advice and any and all treatment decisions must be made together with a doctor.
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